Hello - I am new to the group. Thank you in advance to anyone who is able to respond. I am feeling very worried about the birthmark on my daughter's face. A few doctors have told us it is just an extensive "stork bite" while a few others are concerned about SWS and PWS. We have an MRI scheduled - but it isn't for 2 more weeks. I am kind of a nervous wreck about it. One doctor is concerned because it "crosses the midline and goes over the eye."

I would appreciate anyone's input or comparison with the way their child's PWS looks.

You do need to be seen by a specialist. I know it's hard to be patient, but a 2 week wait isn't that bad. Think of it this way: waiting those two weeks isn't putting you behind in treating it, whether it's a PWS or a stork bite. It's giving you time to become informed and learn what questions you need answered either way. So, try hard not to be nervous.

Other parents will come in soon and back me up on that! Honestly, I was thinking of telling you to go take a nice long bubble bath, but didn't want to sound like I was making light of your nervousness. But the more I think about it, the better it sounds. Take a good break and get away and treat yourself to a little something.

I completely agree with Missy. Even though it is hard to relax it is really the best that you can do. Spend the time doing research and enjoying your child. In the grand scheme of doctors and specialists two weeks isn't a long wait. Best of luck!

Thanks for the good advice. Little Lucy has a double ear infection right now so that is certainly distracting me! I so much appreciate that this group is here. I am curious to know what others with a knowledge of PWS thinks of Lucy's photo/birthmark.

i have zero knowledge of pws but what i can tell you is that you have a happy looking baby who has no clue about the pws and she doesn't have to worry about what the other kids say cause as far she knows she's just a normal baby and knows no different

Hi, I'm new here too!! My daughter recently had an MRI, I was a nervous wreck too, and it came out not as bad as I thought. I've learned to take it easy and stay positive. We need to be strong for them. I'm not an expert, and I don't know what doctors you've seen, but get her eyes checked too. My baby's stains are not that red and she had glaucoma in both eyes. Good Luck!

Thanks so much for replying to my post! I am glad your MRI went better than expected. It is really hard especially when the doctors we have seen have differing opinions on what kind of birthmark it is let alone what underlying conditions are associated with it. Yes, we do have an appointment for an eye exam with pressure test. That one is not until May 10th! We are on a cancellation list in case of any sooner openings. Right now Lucy does this leaning to the side thing (always the birthmark side). She doesn't do it all the time...but enough that I am bothered by it. It is also kind of cute...maybe she is just playing. Only the doctor can tell us.

Good luck with your baby and glaucoma. I wish the best for you and yours

Thank you for the well wishes, I hope and wish you and your baby the best too.

All this testing is all a loooong process, hopefully the MRI will give you a definite answer of what it is. I would say dont worry about the leaning to the side just becuase every baby is diferent, but you are her mommy and mommy's know best, so if you think something is wrong, mention it to the doctors (I would).

I will be sure to give an update with test results when I have them. Questions: Does anyone else have any photos of their child's birthmarks they are willing to share? Also, how long should we expect to wait for MRI results? The good news is that it is on a Monday...so I am hoping to get the results in that same week. I have posted a few more photos here for more opinions. Thank you for viewing!

Becca had a birthmark of similar color to your child's at birth between her eyes and also one on the back of her head at birth in addition to her CMTC markings. The two on her head completely faded away by a year and a half. Unfortunately we have not had fading in her CMTC markings.

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